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 on-demand webinar

Community-based research helps build healthy communities

Video Component

OptumLabs Leadership Learning Series

March 30, 2020

 

Speaker 1:

Hi, everyone. Hello, everyone. And thank you for joining today's webinar, Harvesting Community Knowledge as Power for Well-being: How Community-led Research Generates Insights for Community Health. My name is [inaudible 00:00:23] [Danone 00:00:24] with Optum and I will be your host today. Before we begin, please note the following housekeeping items. At the bottom of your audience console, are multiple application widgets you can use to customize your viewing experience. If you have any questions during the webcast, you can click on the Q and A widget at the bottom of your screen to submit a question. We do capture all questions and we'll be providing follow-up to questions as appropriate. If you experience any technical difficulty, please click on the help widget, it covers common technical issues.

Speaker 1:

You can expand your slide area by clicking on the maximize icon on the top right of the slide window, or by dragging the bottom right corner of the slide window. There is a survey widget which you can use at the end of the webcast to provide us with feedback on today's presentation. Additionally, this presentation uses streaming audio. You may listen to the audio through your computer speakers or headphones. To ensure the best possible system performance, please be sure to shut down any VPN connections and connect directly to the internet. Moderating today's event will be Kevin Larsen, MD, SVP of Clinical Innovation and Translation, OptumLabs. Kevin.

Kevin Larsen:

Hi, thank you so much. I'm really excited for this panel. As [inaudible 00:01:48] said, I'm Kevin Larsen. I'm a physician and researcher and innovator here at Optum working within OptumLabs. This group is put together people that have been doing really groundbreaking work and research in their respective communities and in Minneapolis and in Boston. And we're excited to highlight that work. As you've heard, this is a discussion and a presentation about how we harness this incredible wisdom and knowledge of the community of people with lived experience and bring that in into the research world. I think of this as a way to expand our scientific understanding and reach into ways of knowing, and ways of improvement that we often don't see as researchers or as physicians. We tend to get acculturated to a certain standardized point of view, and that's the goal of our training and goal of our experience, but that sometimes will leave us without the ability to actually ask different questions, ask new questions, ask questions that are really important to the people that we work with.

Kevin Larsen:

And so this panel will talk about how this type of community partnership, some of what we'll talk about is community-based participatory research. Some of it is community-led research, how those things really help us advance our knowledge in improvement and innovation in healthcare. So without further ado, I'll introduce our speakers because they're the stars of the show. First, is an old friend and former educator at the University of Minnesota, I was [inaudible 00:03:44] at University of Minnesota when I met Atum Azzahir, as we were both teaching medical students. She's the founder and CEO of the Cultural Wellness Center in Minneapolis. And with her is her colleague, Minkara Tezet, he's the Griot of Psychology and Psychiatry at the Cultural Wellness Center. They'll do the first presentation. And then some of you may have been here. We had Mariana Arcaya and Vedette speak earlier in the year during our Connections 2020, and they will speak after Atum and Minkara. So without further ado, Atum and Minkara, I turn it over to you.

Atum Azzahir:

So good morning, everyone. As stated, I am Atum Azzahir and I am really grateful that you were able to join us today. As Kevin indicated, we were connected way back when the Cultural Wellness Center first began. And we were at that point, community members really beginning to see what is the alternative to some of the concerns that we have both about research about the academic system, generally, as it relates to community and cultural connection. I have the honor of having Minkara with me today. And the honor really is because in the work that we have done, culture is central for people of African heritage. I have spent many, many years looking at what is my and our contribution as it relates to knowledge. So lots of us really think about our contribution as it relates to society generally, but the reason that I wanted to look at culture and its connection to knowledge is that I grew up in Mississippi, born and raised, born in 1943.

Atum Azzahir:

So part of one of the experience that I had was the very hard, challenging relationship between black people and the university or the school system. And that part of what I began to realize in just trying to understand, get some understanding and some answers to my family's relationship with other people in the area, with the European-Americans. I wanted to understand how my family were so deeply intelligent. And at the same time, were not allowed to attend school, was not allowed to be a part of the formal educational system. So my questions really began at an early age around education. What happens if you're not formally educated? What kind of contributions can you make if you are not formally educated? And really, just all of the questions around that. What I began to see is that that intelligence that I saw in my family that was innate, not just my family, but the other families around me, that innate kind of intelligence really was something that I was bound to document.

Atum Azzahir:

So the Cultural Wellness Center is really my dissertation, I guess I'll use that word to my mother and father and others who did not get a chance to be a part of the formal educational system. But in themselves were very knowledgeable and had skills and had ways of doing things that really had lived with him for a really long time that also gave them resiliency. So the Cultural Wellness Center is my dedication to that. I often think about what does culture give me? What does cultural give our community that once again, hasn't been talked about very much? So the Cultural Wellness Center's name, its presence in the area where we live all came from the relationship that I was able to build over the years with major entities, like the [inaudible 00:08:33] health system and their CEOs and their high level administrators who really were asking questions themselves about how could they do things differently?

Atum Azzahir:

And this was 25 years ago. Believe me, it really is powerful to really see that 25 years ago, we were asking these questions and today, of course, those questions are extremely relevant. The main question was how did infant mortality in the African-American community seem to escape anything that the social service or the public health system or the medical system [inaudible 00:09:18] that was used from those systems, infant mortality with African-American women did not get better. It got worse. So the question was, why do black babies die? Well, because I have, as I said before, studied myself, my family, my own community, I was able to say, well, what I want to know, because the data that you have doesn't make people answer the question, but actually, it silences people.

Atum Azzahir:

The data that talked about why black babies die. So what I want to do is ask people, people who I was really, really close to and myself, why do babies live under the very same conditions that were talked about in the public health literature, those conditions were present for me. Those conditions were present for family members. So why did our babies live? Age, all of the other things that were talked about including being African-American, were not risk factors for everyone, but some people survive.

Atum Azzahir:

So the Cultural Wellness Center's-

Kevin Larsen:

Unfortunately it looks like we lost Atum's internet connection. Minkara, can you step in and give us some of your thoughts that we were hearing passionate words from Atum, hopefully we'll get her back.

Minkara Tezet:

I hope that she'll get to come back with us. I think part of where I was hearing her go really is the mission of the Cultural Wellness Center, which is to unleash the power of people to heal themselves, and to build community really comes out of the question. And it comes out of the method of research that the Cultural Wellness Center uses to really build the network of community that affords us one, to begin to see that cultural communities actually have the ability to have what we would consider cultural authority over knowledge, that we would be able to have the ability to one, have a relationship with knowledge, with knowing, with how to recover ourselves given the brutal environments that people of African heritage have experienced within the context of the United States. And really from that ground, [inaudible 00:11:52] people from cultural communities to begin to articulate for themselves a future for mankind. A way of thinking about being in the world that allows for them to articulate...

PART 1 OF 4 ENDS [00:12:04]

Speaker 2:

... and the world that allows for them to articulate what the problem is and then how to solve the problem. So really what we have here at the Cultural Wellness Center that comes out of the mission statement really, and out of the initial stages of research around why the children were living, why the babies were able to live is really the first part of the people's theory, which was really this downward process. Which articulated that what's really happened as a result of kind of this individuality, the loss of community and loss of culture, that really is what takes away from people's health. What we've learned is as a result of studying how people responded to individuality, the lesson was really that people, once they discovered that they lived in this place could then choose to work together, relate to one another in different ways, that helped them to articulate how to be together in community and to actually house a function within the [inaudible 00:13:08] of the community.

Speaker 2:

So once you've articulated that individuality, loss of culture, loss of community is what makes you sick, what really allows us, or force us to be able to articulate what we know about health really has to do with how we harvest the knowledge, how knowledge has been captivated or captured. I really don't like using the word capture because of how it holds knowledge in a way that objectifies it.

Speaker 2:

But the question for us became about how do people become subjects again for themselves, as a way of being connected to the knowledge that's being produced. So for us at the Cultural Wellness Center, we were intentional, very intentional about creating a philosophy around community that gives people the ability to see their own capacity to generate health, and also see how the generation of health is the ability to produce knowledge, and in that people will be able to create products, processes, and ways of being that allowed them to make sense of how to deal with the current issues that they're dealing with in a particular time periods that they're dealing with that really pulled on the ancient resources or ancient cultural practices that people had innately within their communities.

Speaker 2:

I hope that's making sense so far. [inaudible 00:14:44] to be having a little dialogue about all of this. So I don't want to move too fast through the process or move slowly, but I'm going to just stay here for just a second, because what we realized in the creation of the Cultural Wellness Center as a result of [inaudible 00:15:09] and other community people at the time of the Cultural Wellness Center was being researched and developed really spent time sitting with people in community, sitting on porches with grandmothers, with aunties, and uncles and fathers, and asking them this question about why did the babies live? And as a result of that knowledge that was produced, the mission statement was articulated. Out of that knowledge that was produced, the people's theory was articulated. And out of that process, we were able to articulate our search and examination method, which is what you see in front of you. What often happens in community research is if you look at the bottom, it says the ideas with legs.

Speaker 2:

So ideas actually begin to take shape because of the activities and the ways that people are moving around the thinking. That the thinking isn't so much like it is the world of academia, where oftentimes for the people who are doing the study because of the objectification, it can feel static. So the research is actually the people who are living in the ground in the backyard initiative, which is really the way that we were able to think about what is the blueprint to constructing health. People we're able to, and this is my entry point into the Cultural Wellness Center. And it was really through this particular initiative through what they call a chat system, and chat systems or the chat teams [inaudible 00:16:40] really groups of people who their goal really was to help create the activity that would produce health. So there is a group that I participated in called the Circle of Healing, which was really practitioners who sat with people, who sat and thought about how people dealt with healing, kind of the thinking that they carried from their cultural communities about healing.

Speaker 2:

That was a community health action team of people who were actually providing service, providing treatment in community, but were also seeking space for themselves to articulate what was happening. And then if you see the middle pillar is the community's commission on health. Well, this is a group of citizens or people in the community who decided that they are the ones who are going to be able to since decide how resources get used. They're going to be the people who decide policy to support that network and the system. And they are the natural and organic leadership growing out of the community health action team. And then the third pillar really is the pillar of community members, institutional leaders, organizational leaders, folks who have what we would consider who have different types of added value to a system. The three things that we think about in terms of added value at the cultural wellness center is cash, culture, and connection. And those particular things help us to kind of decide how we work together, how we relate to one another.

Speaker 2:

The slide in front of you really is an image that talks about the data that was produced from the Backyard Initiative. What really comes out of the research that was produced by the participants in the backyard is that there were these four areas that [inaudible 00:18:45] where health how it can be improved. So the Backyard Initiative focuses on the activities that would improve the four indicators of health that you see here. So social support, social cohesion, health education, and health empowerment really became the things that were the undergirding principles that the residents themselves began to study as they consider what it meant for them to be producing knowledge and to producing a community health care, our community caregiving system that was providing care for themselves and for the people closest to them.

Speaker 2:

The biggest challenge for us at the Cultural Wellness Center, and I think for people from communities in general working with institutions really is this idea that I began with, which is how do you think about cultural authority over knowledge. And communities authority over the knowledge that they hold that comes directly from their experiences comes directly from their relationship with what we were considering the divine and creation, or with the creator, or with that forces in creation, the energy, the energetic fields, the ways that people talk about how they relate to all in the universe or the all on the planet, those sorts of things.

Speaker 2:

Well, so that influences the way that communities think about knowledge. That influences whether it's visible or not, how institutions think about knowledge based on what the dominant system says is how we think about knowledge. Now, those two often find themselves colliding with each other. And our work at the Cultural Wellness Center is to avoid the collision by understanding that community has knowledge and also understanding that institutions are also founded in a particular knowledge, which has allowed what has taken place on the planet and our communities and our homes to happen. That there is a level of objectivity that the institutions have had to cover themselves with in order to disconnect from the actual feeling of what takes place, where research happens.

Speaker 2:

And so, the Cultural Wellness Center is attempting to create an overlay or an opening where community has authority over its voice and the articulation of the thoughts that get produced out of our engagements and activities together. Because we realize that at the crux of what is happening on the planet is the lack of ability to know that they have the capacity to produce knowledge. And that that knowledge has the ability to be transmitted across generations through time, in order to help the planet have a sense of being able to maintain itself and function without a particular end.

Kevin Larsen:

[inaudible 00:21:54], that was great. You really did that justice. So thank you. And we are working to bring Elder Atum back. And so when she does, we'll give her some more time. So I will turn it over next to Vedette and Marianna. And they're going to present on work that they have done in partnership with OptumLabs and some of our data, but also in partnership with communities in Massachusetts.

Vedette R. Gavin:

Thanks, Kevin. Good afternoon. Good morning to everyone, wherever you are in the country. Very excited to be here with Marianna. And she and I are just going to briefly share so that we can get into the conversation with [inaudible 00:22:38] and Atum when she returns.

Vedette R. Gavin:

To share briefly a bit about our work with the Healthy Neighborhoods Research Consortium, we kind of are expressing that same value of communities, holding knowledge about themselves that can heal and liberate and really help us to understand and deliver the solutions that we need for communities to be well. And frankly, for systems to be well, taking that note from [inaudible 00:23:05] as well. So this is a picture of our research consortium, a few members of it. We are a research consortium of nine communities in the Metro Boston area. We are made up of about 60 residents, academics, grassroots advocacy organizations, organizers, and government agencies.

Vedette R. Gavin:

And we're a consortium that's led by community working to use research to address challenges around the way our neighborhoods and communities are built and what that means for our health, for health equity, for environmental justice, and the ways that we live together in place. In Boston, there's been a lot of activity just like there's been in communities across the country to say our communities are growing or they need to grow. Right? And so there's a lot of activity to invest in designing and developing places for people to thrive.

PART 2 OF 4 ENDS [00:24:04]

Vedette R. Gavin:

... designing and developing places for people to thrive, so thinking as place as a vehicle that can deliver health. And in Boston in particular, a lot of those plans and decisions were happening without the people who are going to be most [inaudible 00:24:17] and the people who live in places, residents, and particularly in our context, residents of those communities who were thought of as ripe for investment. Those communities that would be transformed, which really meant, on the other side of that coin, the communities that had experienced decades, and in some cases centuries, long disinvestment, exploitation, exclusion, extracting, pollution, and harm. Those are the places where we're now developing, and so there was a common pain point for all of those groups that I mentioned, for planners, for organizers, for residents, around health in place.

Vedette R. Gavin:

On one hand, this is the opportunity to bring new business, to add new housing, to do the things that the city and the region wants to see, and on the other hand, that means gentrification and displacement. And from a systems level, we could call that transformation and revitalization. And for some people, that means being pushed away, that loss that Minkara talked about, when people are separated from community and the command of knowledge and agency that they have, that that's what robs us of our wellbeing. And so all of the partners around the table were saying, "There's a question here to ask about what we're doing and who it really creates health for. Are we seeing health improve because healthier people are moving in? Are we seeing health improve because opportunity in the actual lives of people who are already living there are changing? What do we mean by health improving? Are we thinking of it holistically, in terms of thriving and what it means that we can do and be in the context of our everyday lives? Are we thinking of health as our level of income and our diagnosed mental illnesses, and who's deciding that?"

Vedette R. Gavin:

And so there's an opportunity for all of us, that we recognize, that we wanted to better understand what was happening, but there was really a need to understand how. Like how should these decisions be made, and for whom, and how do we know who is benefiting from those decisions? And so this consortium really used research as a tool to dig into that.

Vedette R. Gavin:

I'll say a little bit more about what we've been focusing on for the last six years. With all the partners at the table, our primary goal has been to understand how, in our context, development was driven by transit-oriented development, to understand how that development and other market-related investment forces were actually impacting our community, affecting our health and our neighborhoods. And we kind of approached that by saying, "What's the information that we practically need? The residents, the community organizers, the activists, the policy makers, what's the information that we actually need to take a different action, to develop a different solution?"

Vedette R. Gavin:

And so we're focused on asking and answering practical questions that are raised, and raised by and important to residents and community organizations and institutions who are working to align and use their resources in service of those advocacy goals. And so we've looked at things around gentrification and displacement to understand who's moving where and why. We've looked at things around how places are changing, what's happening with property values, rent, housing costs, what does that actually mean for the lived experience, the life, the vitality, the connection of communities, and how is that being accounted for? We've looked at things around environmental injustices, and the practices that have worsened or protect us against climate risks, and affect our families.

Vedette R. Gavin:

The next thing I'll say... So we, as a consortium, use a practice called participatory action research. And for us, that's basically research that involves reflection, data collection, and action led by and determined by those who are most impacted, particularly most adversely impacted by the challenge we're trying to solve, and says that the information that we generate should be used to take direct action to improve and address the thing that we're studying. And so this echoes back to what Minkara shared about how do you study yourself and not be an object of study for someone else, but how do you study yourselves to release the capacity to heal?

Vedette R. Gavin:

And so this is our process. We start from the beginning by engaging community partners and saying, "What's the table that you want to shape to come around?" We build relationships with one another, then we develop the topic of interest, then we develop the research question. And we work together to say what would you measure if you were trying to understand this, from your perspective and your expertise of living through this every day? How should we be collecting data, and from whom? What should our sample look like? How much information do we need, and of what types? Are we interested in really understanding through story? Are we interested in really documenting what's happening, culturally? Are we interested in mining big datasets and administrative datasets from our government to understand where we show up and where we see ourselves and where we don't?

Vedette R. Gavin:

So we do all of that in partnership with residents and our grassroots organizations from the very beginning, to make sure that everything that we're asking and answering in service of the information that they need and the action goals that they have. We also analyze the information collaboratively together, because it's in the meaning making. When we gather the information, what does it mean, and for whom? Who does it speak to? And then our dissemination looks like action projects.

Vedette R. Gavin:

We, at the end of meaning making, say, "How do we apply this to the things that we are working on in an ongoing fashion in our own communities to help take us to the next step, to help us take action?" And we repeat the process. And we're working this practice together in community over time, with these different types of data that you see here.

Vedette R. Gavin:

And I'm going to turn it over to Marianna, who's going to give you a closer look into what that actually looks like in our research.

Mariana C. Arcaya:

Sure, thanks, and I'll be quick so we can get to the discussion. But as Vedette said, we are really oriented on what are the research needs to inform action, resident-owned driven action? And so we come into this process really agnostic about what the data collection should look like, what the datasets we are going to be working with look like, what the methods that we need to use to analyze them look like, and this has produced what ends up looking like a very mixed method study. So for some of our questions, it's been clear from the resident perspective that there's really a data gap on lived experience, there is a data gap in collecting detailed cross-tabulated information from residents that are harder to see show up in other forms of data collection. So we have homeless populations overrepresented in our dataset, people in supportive housing overrepresented in our data set.

Mariana C. Arcaya:

It looks like qualitative in-depth interviews that we conduct with people, and that we also repeat a quantitative survey with annually, and so the primary data that we collect... We collect about a thousand surveys in the communities, collected by resident researchers each year, so we have a data set of around 4,000 surveys at this point. And we have about 150 people enrolled in our longitudinal interview cohort, so we have annual survey data on them, and then annual in-depth interview data.

Mariana C. Arcaya:

And then there are times where we have questions that we know that we cannot answer by collecting our own data, and that's where we go and we look for partners who have access to big datasets that we can take a participatory action research approach to problematizing the topic from the resident perspective, framing the research question from a way that feels relevant for action in neighborhoods, and then doing the analysis. And so here are just some examples of what this looks like. Our collaborative analysis is a really important step, because it ensures that the research consortium is at the table when we make meaning of the data.

Mariana C. Arcaya:

Here's an example of how we do this with our primary survey data. So for example, after we have collected our survey data and we work with residents to say, "What relationships do we want to understand in these survey questions?", we'll do exercises that are highly visual. Each variable will go on one of these little red cards, we'll give people glue, tape, marker, stickers, poster boards, that sort of thing, and say, "Arrange these in a way, spatially, that represents how you think these topics relate to each other." And in this one example here, we collected a series of these poster boards that were meant to capture the relationship between the environment and health, and said, "What are the commonalities across these graphics?", and then we fit a structural equation model with our survey data that reflects the patterns as people lay them out visually.

Mariana C. Arcaya:

We do collaborative data analysis with our qualitative data, so here's an example of how we do that. This is from a collaborative data analysis workshop, where we took transcript excerpts that were really relevant for understanding the experience of financial insecurity, and then, in teams, had asked resident researchers to go through line by line and pull out the big themes and analytic codes that they felt jumped out from each line in the transcript. And then we compared how would you group these together into overarching qualitative themes? Are there any quotes that you think really capture the theme that we can use as an in vivo code? For those of you who do qualitative research, that will sound familiar. How do we develop a qualitative code book based on your reading of these transcripts? So we do a collaborative qualitative analysis, there's not too much precedent for that in the literature.

Mariana C. Arcaya:

And then here's an example of the type of research we do with secondary data partners. So this is actually results from an Optum labs analysis, and what this analysis is trying to tackle this question that Vedette posed earlier. If we're seeing health improvements in gentrifying neighborhoods, is that because we can take credit for the fact that "improvements" in the neighborhood improve health, or is the reality that healthier people are moving in under conditions of gentrification? And what this analysis based on Optum labs data shows is that people who leave our study sites are healthier than those who stay, and they're actually healthier in advance of the move, so it looks like there's some health selection evidence.

Mariana C. Arcaya:

And this is the last slide. As Vedette mentioned, our research is all really pointing at action, and so this is just one example of how we do this. On the left-hand side of the slide here is another big data analysis project we did with the Boston Federal Reserve Bank. We got access to a consumer credit panel that gave a random sample of adults with credit scores in our state, and we looked at each quarter, where were they living? So we were able to create this really detailed map about where were people starting, where did they move, where did they move next, and how did that vary, based on their access to credit, their credit score? And we could kind of map out the geography of opportunity for people leaving gentrifying neighborhoods, neighborhoods that were persistently poor, people with high access to credit, low access to credit, and this feeds into anti-displacement-

PART 3 OF 4 ENDS [00:36:04]

Mariana C. Arcaya:

Access to credit. And this feeds into anti-displacement advocacy work, and you can see some examples here, testimony, an anti-displacement toolkit, for example, that we produce. And so, we're really combining, we're using lived experience and we're centering sort of resident perspectives on the problems to generate our own primary data, quantitative data, qualitative data, and then look and find secondary data partners that we pair up with people who have those analytic skills to inform locally driven action. That's a bit about our project and I'll stop there.

Kevin Larsen:

Thank you so much for that, Mariana. A reminder to the audience, there is a Q&A button at the bottom. We cannot unmute you, but please put any questions into that Q&A box, and very pleased to welcome Eldra [Tune 00:36:52] back. You were cut off kind of mid thought. I want to give you a chance to complete some of your thoughts Eldra, to you.

Eldra:

Because I don't know where I was cut off, I think I'll just wait for the question.

Kevin Larsen:

No problem at all. So, this was fantastic and I see a lot of real similarities, but also some differences in the work that you do. I'd really like to start with you guys asking each other questions. So, who has questions for each other within our four panelists?

Kevin Larsen:

Well, my question [crosstalk 00:37:38] has to do with, you talked about culture and could you say a little bit about how you define culture, because we've spent so much time on that within our work?

Kevin Larsen:

Mariana?

Mariana C. Arcaya:

Sure. I can start. I think where we really try to be clear on culture is actually in our power process where we showed that diagram of how we work with partners throughout the process. And one of the things that we've recognized and understood together is that at this very high level, culture is the collective, what set of values and way of being for our group of people that holds them together. And so, one of the things we had to do coming into the work, building those relationships up front is to say we won't all understand our communities at different geographies throughout the state and have very different cultural mixes, ethnic identities, different experiences. In some cases, we don't share a language, right? And so-

Kevin Larsen:

Mariana, I think we're getting feedback from you. Go ahead, Vedette.

Vedette R. Gavin:

One of the important things was for us to all take a posture of learning from one another about culture, and we do that in our design, but I think mirroring something that Minkara mentioned earlier, we have an intentional practice that says what is mainstream knowledge. We spend a lot of time digging into that for communities and for residents, from your lived experience, what is mainstream knowledge? And then also, from our perspective as an institution, what is mainstream knowledge? And we talk about who the audiences are for those and who abides by those norms. And then we talk about what is experiential knowledge. That is the information, that truths, the facts, that I carry with me from being a human being who is alive on this earth. And so, people could tell me all day the cure for a upset stomach is not ginger ale and a nap, but I'll tell you from my lived experience that it works a hundred percent of the time, right?

Vedette R. Gavin:

And so, that's a set of facts, but then the cultural knowledge, these are the set of truths and understandings that a group of people have because of their shared lived experience values and beliefs. And so, what we do in our work is we don't question them and we don't force people to define them. We just equally weight them. And we say, "How do we structure our research so that we can truly be in partnership with one another where those things overlap? Where does experiential my expertise, my lived experience overlap the collective cultural knowledge and where does that overlap or show divergence from the mainstream knowledge?" And just being very clear about that alignment and those separations has been how we've approached that. And we haven't spent as much in-depth time having the clear theory of change or definition of culture as the one that your project does, which I think is just so phenomenal. So, I'd love to hear a little bit about how you all approached digging into and surfacing such a clear concept of cultural knowledge and the command of cultural knowledge.

Eldra:

Well, maybe that's one of the places where I was kind of cut off, because I was saying to people that part of what happened with the cultural wellness center and the cultural wellness process is that I began to study is, what way will people of African heritage, what way will black people begin to step into mainstream with their whole self intact? So, what I wanted to know is how do we recover ourselves before we go into mainstream, considering that mainstream, with my generation, there was no accessibility to what mainstream offered. No accessibility to healthcare, to medicine. No accessibility to, really to education, because my generation and those before me had to really find ways and fight very hard to access the mainstream resources, whether they were physical or service resources. So, I think that what the culture wellness approach is, is to self study and self recover.

Eldra:

And what we were recovering, as people of African heritage, is culture, because the perception is we have no culture. We only have history. And that history is defined by the context within which we live. So, what is culture? And we began to see that culture defined the symbols that people create to give themselves continuity and cohesion over time. And so, that's the definition we created from our study and also with other elders in particular, those elders who were studying culture. We put that in place, and so if that's what's going to give us the capacity to stand on the same footing with other people, especially those who, in the past, we would have referred to as perpetrators.

Eldra:

So, we were really looking at how do we reclaim our own humanity and then begin to work within humanity in a way that we may get contribution to what is known, because we had been declared as not knowing. And so, that's what ours was. We were trying not to be, I personally, and others working with me, was trying not to react to what had happened to us, but to respond by studying what it is that we brought into resiliency that was to be studied. And it's that resiliency that gave us the definitions that we use, both of culture and of health, and in particular, to research, because research is.

PART 4 OF 4 ENDS [00:45:09]

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How Community-Led Research Generates Insights for Community Health

Today, building healthy communities is one of the most significant opportunities to advance health equity. Culturally informed, community-based participatory research is a powerful tool in closing historically unchanged gaps.

See how two communities are combining the power of residents' lived, experiential knowledge with rigorous research and big data. This helps them better understand and address the complexities of building healthy communities.

Speakers:

  • Atum Azzahir, Founder and CEO, Cultural Wellness Center
  • Mariana C. Arcaya, PhD, Assistant Professor of Urban Planning and Public Health, MIT
  • Vedette R. Gavin, Senior Research Consultant, Conservation Law Foundation

Moderator:

Kevin Larsen, MD, SVP Of Clinical Innovation and Translation, OptumLabs